IVIG Results

I have been receiving IVIG treatments for CIDP for a little over 2 years. After the first treatment I was so sick that I didn’t recognize improvement in my strength for almost 2 weeks. Results have shown up quicker with subsequent treatments (a week or so). My treatment seems to last about 4 months. Have been on semi-annual treatment, but moving to 3 times a year now. However, the results from the IVIG are nothing short of a miracle for me.

Side effects can be brutal. Initially, I got a rash over most of my body that started a week after IVIG and lasted 6 weeks or longer, even with the steroid cream prescribed by a dermatologist. My doctor changed me to Gammaguard and added Prednisone (20 mg day before, 20 mg day 1, and 10 mg days 2 and 3). Not sure which made the difference, but the rash has not been seen since.:)

The headaches are another story. Pressure type pain (severe) with stiff neck and some nausea. Usually lasts 3 to 4 days. With me it starts the day after I have completed IVIG.

I do get Benadryl and Tylenol before IVIG. Learned last year to hydrate before and after (Smartwater and Gatorade were recommended).

The treatment is very effective for me but would love to find something to ease the headaches. Anyone had any success with headache treatment? I spend at least 2 days in bed after each IVIG.